How are you all? On good form I hope. As I write, celebrations are beginning to take place in the USA to mark the 25th anniversary of the Americans with Disabilities Act. Our own legislation, previously called the Disability Discrimination Act, will be 20 years old in a few weeks time. This got me thinking about the changes that have occurred in that time, but rather than just focussing on some of the major improvements that have taken place, I’ve been reflecting on some of “smaller” but no less significant things that have changed.

Back in 1995 the smartphone hadn’t been invented, the Blackberry came along in 1997. Email was still in its infancy and letters and memos were the usual way to correspond. The Internet was only five years old, Google launched in 1998, so we visited the library to do our research. We used acetates and overhead projectors for presentations; PowerPoint was an expensive and somewhat unusual alternative. Projection equipment lagged behind the software.

It was quite acceptable for organisations to expect disabled people to provide talks or presentations for free. In fact, for many, it was quite a shock to be asked for money! We often arrived to give a presentation, only to find the venue or the stage itself was inaccessible. Sign language interpreters were a rarity at such gatherings. Audiences were still surprised to see a disabled person providing the speech and were even more surprised when the disabled person’s facilitator did the talking. We talked about disability awareness not disability equality or confidence.

So much has changed, today disabled people are more likely to travel on trains and buses, have access to many more buildings, stand a better chance of getting a job, independent living is seen as a right rather than a luxury. The technologies may have changed, our expectations have certainly increased but as you’ll see from this week’s news, the need to change hearts and minds continues.

Have a good week and here’s to the next twenty years!

News Roundup

UN investigators begin taking evidence in UK on ‘rights violations’
A team of United Nations investigators has this week begun a two-week visit to the UK as part of an inquiry into allegations of “systematic and grave” violations of disabled people’s human rights.

Disability News Service (DNS) revealed in August 2014 that the UK appeared to have become the first country to face a high-level inquiry by the UN’s committee on the rights of persons with disabilities (CRPD).

The committee said last summer, when approached by DNS, that it was not allowed to say whether the inquiry was underway, and that level of secrecy has continued with this month’s visit, with those giving evidence asked to sign confidentiality agreements.

But some details of how the inquiry into breaches of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is proceeding have emerged.

DNS understands that a team of about six UN staff has arrived in the UK, including two disabled CRPD members, and will visit London, Bristol and Manchester, as well as Scotland, Wales and Northern Ireland.

They are due to meet parliamentarians, disabled people’s organisations, civil servants, representatives of local authorities, academics and senior figures from the Equality and Human Rights Commission.

They will also hear direct evidence from scores of individuals about the impact of government austerity measures, including former users of the Independent Living Fund (ILF), whistleblowers and disabled activists.

Among the issues being raised are believed to be the government’s decision to close ILF; cuts to legal aid; benefit cuts and sanctions, including the impact of the discredited work capability assessment; the severe shortage of accessible, affordable housing; the impact of the bedroom tax on disabled people; cuts to social care; and the rise in disability hate crime.

Anne Pridmore, a disabled activist and former ILF-user who did not sign a confidentiality agreement but was due to give evidence about the impact of the ILF closure, said: “I am going to say that I am pissed off with being messed around. It is affecting my mental health.”

Nearly four months after the ILF closure, she still does not know if she will be able to stay in her own home, and cannot tell the six personal assistants who work for her whether they will soon be out of a job.

She said: “It is all because of this dreadful government who have stopped the ILF and put nothing in its place. Social care is in a terrible mess.”

Pridmore praised the role played by Disabled People Against Cuts (DPAC), which triggered the inquiry after becoming increasingly concerned by the disproportionate impact of the coalition’s cuts on disabled people.

She said she hoped the inquiry “embarrasses the government”, and added: “Hopefully it will give people confidence that something is being done to support them.”

Another disabled activist said: “I’m really happy that someone is listening, yet absolutely horrified by my own and so many other people’s situations and health conditions worsening and the lives being devastated as a result of the closure of the ILF and all the other cuts being made as a result of the ‘welfare reforms’ and the lie of ‘austerity’.

“Some of the stories I’ve been hearing are absolutely shocking and utterly heart-breaking.

“Knowing the UN are investigating is making me feel hopeful, despite everything.

“I really hope the UN will not just gather enough evidence to prove this government is guilty of human rights abuses but that it will then be able and willing to act decisively in order to help bring an end to this cruelty and abuse.”

She also praised DPAC, as well as Inclusion London, which has been closely involved in organising parts of the two-week visit.

A Department for Work and Pensions spokesman said: “We strongly reject the allegations made by DPAC.

“The UK has a proud record of furthering the rights of disabled people, with the principles of the UN convention at the heart of its approach. We continue to spend around £50 billion a year on disabled people and their services.”

The inquiry has taken place under the convention’s optional protocol, which allows individuals and groups who are victims of a violation to submit a complaint to the CRPD about any state, like the UK, that has signed up to both the convention and the protocol.

The government is refusing to release information that would reveal which ministers and civil servants decided how to respond to the death of a man who killed himself as a direct result of being found “fit for work”.

Disability News Service (DNS) revealed last month that a coroner had demanded government action after an inquest into the death of Michael O’Sullivan, from north London.

The coroner, Mary Hassell, wrote what is known as a prevention of future deaths (PFD) report, and sent it to the Department for Work and Pensions (DWP), because she said there was “a risk that future deaths will occur unless action is taken”.

O’Sullivan had severe mental health problems, including anxiety, depression and agoraphobia, and expressed suicidal thoughts in his ESA application, but medical evidence from three mental health professionals was ignored in the benefits assessment process.

It is believed to be the first and only time a coroner has used a PFD report to draw attention to flaws in the discredited work capability assessment (WCA) system, and the only time a coroner has directly blamed that system for a death.

In its response to Hassell’s report, DWP said it planned to issue a reminder to staff about guidance on such cases, but appeared to make no further suggestions for how to prevent further deaths.

After uncovering the report, DNS submitted a request under the Freedom of Information Act, asking for the name and job title of the most senior DWP civil servant to read and act on the PFD report and the action they recommended, as well as the names of ministers who were shown the report, and the action they took.

In response to the request, a civil servant in DWP’s ESA [employment and support allowance] and WCA policy division confirmed “that we hold information falling within the description specified in your request”.

But he or she said it would be too expensive to comply with the request, because it would take the equivalent of one civil servant more than three-and-a-half days to produce the necessary information.

After receiving that response, DNS asked DWP’s press office to explain why it would take so long to produce such basic information (the case has received wide publicity over the last month, and has been mentioned in parliament and across mainstream media).

A DWP spokeswoman said: “People can ask for a review of the response to their FOI.”

DNS has now asked the DWP to review its freedom of information response.

Meanwhile, two opposition MPs have raised concerns about the Michael O’Sullivan case in parliament.

Jim Shannon, the DUP’s shadow spokesman on health and equality, said the case had shone a spotlight on the “utter disgrace that is the work capability assessment in relation to people with mental health problems”.

He said: “Despite providing reports from three doctors, including his GP, stating that he had long-term depression and agoraphobia and was unable to work, Michael O’Sullivan was taken off [incapacity benefit] and placed on jobseeker’s allowance.

“At the inquest last year, it was found that he killed himself as a direct result of that decision.

“According to the coroner, Mary Hassell, ‘the intense anxiety which triggered his suicide was caused by his recent assessment by the Department for Work and Pensions as being fit for work and his view of the likely consequences of that’. That cannot be allowed to happen again.”

Eilidh Whiteford, the SNP’s shadow Westminster social justice and welfare group leader, said the death of Michael O’Sullivan was not an “isolated case”.

She pointed to the death of Ms DE, whose suicide in 2011 was the subject of an investigation by the Mental Welfare Commission for Scotland.

She took her own life after scoring zero points in a WCA “made in the absence of an ESA50 [application] form and without any additional information from her clinicians.

“The only information her assessor had about her condition was a single word, ‘depression’, which in her case masked a long and very complicated psychiatric history.

“Both her general practitioner and her consultant psychiatrist considered her unfit for work at the time of her death, even though she had worked for most of her adult life and wanted to go back to work.

“The distress caused by her benefits assessment may have played a role in her suicide. The investigation concluded that there was ‘no other known trigger’ for the events that took place.”

Whiteford said there were likely to be other cases like those of Ms DE and Michael O’Sullivan.

The minister for disabled people, Justin Tomlinson, did not mention the cases of Ms DE and Michael O’Sullivan in responding to the debate.
WRAG cuts will ‘lead to more tragedies’, says Abrahams

Planned cuts to out-of-work disability benefits will lead to more “tragedies” in which disabled people will lose their lives, Labour’s new shadow minister for disabled people has told fellow MPs.

Debbie Abrahams, a former public health consultant, was speaking as she and fellow opposition MPs
failed in their first attempt to throw out plans to cut support for new claimants placed in the work-related activity group (WRAG) of employment and support allowance (ESA) by nearly £30 a week from April 2017.

Abrahams pointed to the government’s own figures, which showed that the death rate of people on out-of-work disability benefits had increased – in comparison with the general population – from 2003 to the period between 2011 and 2014.

She pointed out that people in the WRAG were 2.2 times more likely to die than the general population.

She said: “The innuendo that people with a disability or illness might be ‘faking it’ or are ‘feckless’ is quite frankly grotesque and belies the epidemiological data.

“Incapacity benefit and ESA are recognised as good population health indicators. I can say that as a former public health consultant. I have experience of this and I have worked in this field.

“The release of the government’s own data, which show that this group are more likely to die than the general population, proves that point.”

Abrahams said the government had “continually maligned, vilified and demonised” benefit claimants, while its use of words like “shirkers” and “scroungers” had led to these terms being used far more often in the media.

She said: “This group of people are vulnerable and need care and support, not humiliation, from us.

“Once again the cart is being put before the horse: make cuts in support and cross your fingers that something turns up for disabled people.”

Priti Patel, the employment minister, said the work-related activity component was introduced by the last Labour government “as an incentive to encourage people to participate in employment”.

She said: “Clearly, we know that that has not happened. We are therefore reforming our approach with DWP, through our jobcentres and work coaches, to support individuals to get back into work.”

She added: “Through all our welfare reforms we have made it clear that we will continue to protect and support the vulnerable.

“That of course includes those who have terminal illnesses or people with progressive illnesses who are unable to work.”

During discussion of a related clause of the bill, Patel added: “It is very easy for Labour members to claim that the [WRAG] measure is about taking money away.

“It is about providing the right kind of support for people with health conditions and disabilities.”

After Labour MP Naz Shah asked her if “the number of people who have committed suicide after sanctions have affected their mental health problems is acceptable”, Patel said that there was “no causal effect at all”.

Neil Coyle, a newly-elected Labour MP and a former director of Disability Rights UK, told Patel: “Some 440,000 disabled people have to pay the bedroom tax… and benefit rates have been frozen, including the vast majority of employment and support allowance benefit paid to disabled people.

“We have also had the change to disability living allowance.

“It is very frustrating to hear ministers continue to claim that disabled people have been protected when they clearly have not.”

Abrahams said the cuts to WRAG payments would affect 500,000 disabled people, according to the government’s own estimates, and she pointed to a “whole host” of other cuts to social security support for disabled people since 2010, as well as cuts to social care.

She said the UK was currently ranked only 19th of 32 European states on how much it spends on disabled people (1.3 per cent of GDP), and that, by 2021, about £640 million a year will have been cut from disabled people’s support through the WRAG cut, while only £100 million a year of that would be spent on “unspecified” assistance to help them into work.

She told the committee: “With this cut to the ESA WRAG support without anything to replace it, the government are condemning more people with disabilities and their families to living in poverty, and I predict, unfortunately, that more tragedies will undoubtedly happen.”

The SNP’s Hannah Bardell said the proposal to reduce the WRAG payment by just under £30 a week was “completely immoral and makes absolutely no sense”.

She said: “ESA claimants have always received a higher rate than those on JSA, because they typically take longer to move back into work, as they face additional barriers.”

She said: “The Conservative manifesto committed to halving the disability employment gap, but it is my party’s contention that the reduction in the ESA WRAG component will in fact present more barriers to those with disabilities who are trying to get back to work.”

The part of the bill that will cut the WRAG payment was passed by the committee by nine votes to eight.

Activist loses appeal over ‘unfair’ 20 metres PIP consultation

An activist has lost his bid to prove that a public consultation on plans to tighten eligibility for the new disability benefit was unlawful, but says his legal case has still exposed the government’s “callous disregard for disabled people”.

The court of appeal ruled this week that the Department for Work and Pensions (DWP) had carried out a proper consultation on its plans to slash the qualifying distance for the higher rate of mobility support from 50 metres to just 20 metres.

The appeal was heard in July this year, and this week the court of appeal ruled that DWP’s consultation was not unfair or unlawful.

Sumpter, who can only walk a few metres with a stick, and otherwise uses a wheelchair, was assessed as eligible for the higher rate mobility component of disability living allowance (DLA), and uses that to lease a car through the Motability scheme.

But Sumpter fears losing the higher rate entitlement when transferring to the new personal independence payment (PIP), and consequently losing access to a Motability vehicle.

Under DLA, someone is eligible for the higher rate if they cannot walk more than 50 metres, but under the new rules for PIP – which is gradually replacing working-age DLA – this walking distance criteria has been set at just 20 metres.

DWP consulted on the introduction of PIP in 2012 but did not mention its plans to cut the criteria from 50 metres to 20 metres until after the consultation had closed.

Last year, a judge suggested that if the consultation process had stopped at this point, he would probably have found it unfair and unlawful.

But after Sumpter’s judicial review was issued, the disabled people’s minister Esther McVey carried out a second consultation, limited just to looking at the 20 metres measure.

When McVey’s ministerial successor, Mike Penning, published his response to the consultation, he made it clear that the walking distance criteria would remain at 20 metres.

Sumpter’s legal team argued that this second consultation was irrelevant because the decision had already been made.

But the court of appeal concluded that the government had approached the second consultation “with an open mind”.

Lord Justice McCombe, one of the three appeal court judges who heard the case, said in the judgment that Sumpter’s argument would prevent decision-makers in the government’s position from “trying to put right errors in consultation processes that are pointed out to them by looking again at the areas of criticism”.

He added: “As I understand the law, consultation has to be fair; it does not have to be perfect.”

Sumpter, who blogged about the judgment today (Thursday), told Disability News Service: “I am disappointed that we were unable to change anything about PIP, but I am glad that we tried.

“The DWP imposed a cruel trade-off on disabled people in increasing support for some disabilities only by cutting help for those with physical impairments.

“In forcing the government to defend this we exposed their callous disregard for disabled people and our ability to go about our lives.

“It certainly does not fit in to their mantra that disabled people will work their way out of poverty, since for many people the loss of support will mean they can no longer work, or even leave their homes.”

Alastair Wallace, a specialist public lawyer at Irwin Mitchell, who acted for Sumpter in the case, said: “Our client originally challenged the consultation during the creation of the PIP system and while our challenge was unsuccessful, we still believe that the current proposals are unfair.

“We are disappointed by this outcome and our client’s focus will now be to ensure that the new scheme is properly implemented.”

A DWP spokesman said: “We are pleased that the court of appeal has unanimously endorsed the decision of the high court that the consultation process was fair and lawful.

“We remain committed to the full rollout of PIP, a benefit which helps disabled people to live independently by ensuring support is focussed on those who need it most.”

Only five individuals out of the 1,142 organisations and individuals who took part in the second consultation agreed with the government that the walking distance criteria should be set at 20 metres.

Government figures predict that, with the criteria set at 20 metres, the number of people receiving higher rates of mobility support – and therefore eligible for a Motability vehicle – will plunge from 1,030,000 (if DLA had not been replaced by PIP) to just 602,000 by 2018.

They also predict that 548,000 of the 892,000 working-age people who were receiving the higher rate of the DLA mobility component in February 2013 will not receive the enhanced mobility rate of PIP once they are transferred to the new benefit.

Shocking survey results show ‘yawning gap’ between Care Act and real life

Nearly half of disabled people receiving care and support from their local authority say their quality of life has fallen in the last year, despite major new legislation designed to boost their well-being, choice and control.

The survey of 399 disabled people was carried out by the Independent Living Strategy Group (ILSG) – some of whose members were part of the independent living movement in the 1970s – as part of a report assessing the impact of the Care Act 2014 on choice and control.

The group was set up by a broad range of disabled activists and disability organisations concerned about the potential impact of welfare reform and cuts to public services on independent living, and the government’s failure to follow through on its 2010 pledge to monitor the implementation of Labour’s independent living strategy.

Their report was funded and published by In Control, the charity which helped develop the idea of personal budgets*.

ILSG members wanted to find out how local authorities were following “the spirit and letter of the Care Act and its statutory guidance in seeking to optimise choice and control”, which they say is “fundamental” to the Care Act’s “core purpose” of helping people achieve the outcomes that matter to them.

More than 45 per cent of those surveyed said their quality of life had reduced over the past year, including 18 per cent who said it had fallen significantly.

Almost 30 per cent said they had experienced a reduction in choice and control over their support in the past year, while only eight per cent said it had increased.

And nearly 30 per cent of respondents said restrictions had been placed on their use of direct payments or personal budgets.

The report warns that social care spending by local authorities had already fallen by £4.6 billion from 2010-11 to 2014-15 – a real terms cut of 31 per cent – while the government’s imminent spending review had “opened the door to even deeper cuts in the years to come”.

Some councils have introduced restrictions on how disabled people can spend their personal budgets, such as banning them from using them to pay for gym memberships, or for personal assistants to accompany them on outings.

Others have imposed a “cost ceiling”, which means the council will pay no more for independent living than the cost of a residential care placement, despite Care Act guidance making it clear that such practices are unacceptable.

The report calls on central government to ensure that funding to local authorities is “sufficient to enable them to meet their statutory obligations as a minimum, let alone the broader goals and aspirations of the Care Act in respect of prevention and well-being”.

But it also says that there are many things councils can do, “irrespective of their financial position”, to promote choice and control and “strive to meet the letter and spirit of the Care Act 2014”.

Jenny Morris, one of the report’s authors and another ILSG member, said the survey results were “very shocking”.

She there was a “yawning gap between the welcome principles of the Care Act 2014 and what is actually happening to older and disabled people”.

She said: “The whole value system behind personal budgets is incompatible with the massive reduction in expenditure on social care which local authorities are facing.

“There are some local authorities where a significant proportion of social workers and managers are not signed up to the choice and control agenda, but any progress is being made almost impossible by the massive reductions in the funding available.”

She said: “Personal budgets were supposed to enable everyone who needed social care support to have the kind of choice and control that was previously only open to those receiving direct payments.

“Instead, they have been rolled out in the context of a major financial crisis facing adult social care, and the result is not only a reduction in choice but also a decrease in the quality of people’s everyday lives. This is the government’s responsibility and they must act.”

She said ILSG would continue to monitor the state of independent living, including through future surveys.

And she called on councils to “make it clear to government that the current financial climate is incompatible with what they are required to do, according to the Care Act and the statutory guidance that accompanies it”.

Sue Bott, deputy chief executive of Disability Rights UK, added: “Local authorities might argue that it is early days in the implementation of the Care Act, but if you don’t start as you mean to go on then the spirit of the act will never be implemented.

“This report demonstrates, and the calls to our advice line also show, that disabled people are being denied choice and control over how support needs are met and that independent living is being fundamentally undermined.”

*A personal budget is a sum of money allocated by a local authority to meet a person’s care and support needs, while direct payments allow a disabled person to take such a care package as a cash payment

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Author: PhilFriend

Dr Phil Friend (OBE FRSA) himself a wheelchair user, is acknowledged as the UK's foremost consultant on disability matters. A powerful and highly popular communicator, his company – Phil & Friends – provides consultancy to many of the country's best-known companies. In addition to his professional activities, he is also a respected champion for equal opportunities and diversity in general, where his special blend of humour and direct speaking has won admirers from around the world.
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